Background The experiences of nurses caring for children in Paediatric Intensive Care (PIC) who transition from curative care to palliation and end of life care have the potential to be extremely varied and pose opportunities to be both a privilege and a challenge. A review of the literature was conducted to discover what may already be known about the experiences of nurses caring for children during this time of transition.
Method Medline, CINAHL, PsycINFO, Web of Science and ASSIA were searched. The databases were chosen to incorporate a variety of publications with differing disciplinary focus. MeSH and key search terms used included:
Terminal care/Palliative care/end of life care
Broad terms were used to capture as many articles as possible and were then checked visually for relevance.
Results 488 articles were identified, only 8 are included in the review. Reasons for exclusion included duplication focus on communication, education, interventions/change in practice, ethics or law.
Settings of the studies were adult intensive care and acute care, and paediatric oncology and acute care. From the 8 articles, the following themes arose:
Making a diagnosis of dying and recognising the point of transition – knowing when the time is ‘right’ for a patient to transition to palliative or end of life care.
Timing of transition and reaching a consensus
Families – reaching a consensus, holding on to false hope
Professional issues – emotional burden and crossing boundaries.
These all contribute to nurses experiencing frustration and increased levels of stress.
There are clear commonalities in these studies; however none specifically explore the experience of PIC nurses in the UK when caring for children transitioning to palliative or end of life care.
Conclusion There is a clear gap in the research in this area. There is a qualitative study in a regional PICU being undertaken which will begin to address this.
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